As a hypothyroid patient, think you are fine drinking that purely fine mineral water from a plastic bottle? Think that fluoride and chlorine are the only substances we need to worry about when it comes to our thyroid health?? Think again.

Thyroid patient Amy McMullen, who has contributed before on STTM’s blog as a GUEST POSTER (Confessions of a Undercover Thyroid Advocate) and has a passion about human rights, has written another important article below which should be of keen interest to all of you.

BPA—A POWERFUL ENDOCRINE DISRUPTER THAT AFFECTS YOUR THYROID

Perhaps you have read recently about how the chemical Bisphenol A (BPA) is found to be prevalent in our food and water. As a hypothyroid patient, I was surprised to see that not all articles about this harmful substance adequately describe the connection between thyroid function and BPA. This is an oversight that should be addressed since hypothyroidism is estimated to affect over ten million people in the US and this number is growing. It makes perfect sense to look to environmental toxins as a likely culprit in this serious health epidemic.

BPA is a synthetic estrogen and an endocrine disrupter that causes multiple health problems. There are over 200 studies linking it to breast cancer, obesity, attention deficit disorder, early puberty in girls, genital abnormalities in boys and girls alike, polycystic ovary disease and infertility in women and prostate cancer in men. Studies indicate that up to 92% of Americans have BPA in their urine. Also BPA doesn’t leave the body quickly; fasting adults still had BPA levels in their bodies after 24 hours.

BPA comes from many plastic sources. It’s used as a hardener in plastic manufacturing. Many tin cans have plastic linings that contain BPA including soup and tomatoes, and it’s also in plastic water bottles, some infant formulas and canned juices. BPA is also found in PVC water supply piping.

How does BPA relate to thyroid disease? According to a several good studies, BPA is a thyroid receptor antagonist. This means that BPA will interfere with the binding of the thyroid hormone T3 with cell receptor sites. This will cause hypothyroidism, not only with people with under-functioning thyroids but also for those who are currently taking medications for hypothyroidism or even those who have normally functioning thyroids. BPA was found to accumulate in many organs when injected into rats including the lung, kidneys, thyroid, stomach, heart, spleen, testes, liver, and brain. In this way, BPA has the potential to interfere with thyroid hormones in each organ that has accumulated the substance. A study also indicates that the levels of BPA that are considered safe (upper limit of emission is set to 2.5 ppm [µg/liter], which is more than 90 µM) are high enough to inhibit thyroid hormone receptors. Yet another study shows that BPA appears to accumulate in rat fetuses in significantly high levels and disrupts thyroid function in baby rats.

There’s also evidence that BPA may influence the metabolism of endogenous steroids, which may be a factor in adrenal fatigue and its treatment, as well as and its treatment, as well as dysautonomia stemming from adrenal problems. Many with hypothyroidism also suffer from co-morbid adrenal fatigue and BPA may be a contributing factor in this.

What this means for everyone, but especially for thyroid patients, is every effort should be made to remove BPA from food and water supplies. For those who are not able to get properly optimized on their thyroid meds or who are finding they are suffering from hypothyroid symptoms despite normal levels of TSH, free T3 and free T4, consider BPA as a possible source of the problem.

Steps you can take to minimize you exposure include:

• Avoid all canned foods with plastic liners and avoid bottled water. Buy your canned tomatoes in glass jars, not metal cans or stick to using fresh ingredients. Most other canned foods use BPA as well, especially green beans (Here is a list of BPA-free canned foods).
• Drink water out of glass or stainless steel containers (and make sure there’s no plastic liner or lids that have BPA) or BPA-free plastic. Low density polyethylene bike bottles contain BPA.
• Do not microwave foods in plastics or use plastic wraps when microwaving. Avoid polycarbonate (“PC” or #7 and #3) plastic food containers altogether.
• Since most municipal water piping is PVC and some houses have it as water supply lines, consider installing a reverse osmosis system for your drinking water. This will also remove fluoride and chlorine (other thyroid disrupters) and many other harmful substances from drinking water.

Most importantly we need to make our voices heard that BPA is not an acceptable substance and that its use in our food and water supply must cease. Recently Senator Feinstein introduced a ban on BPA to the Food Safety Modernization Act but this was modified to remove the ban due to pressure by industry groups. Senator Feinstein still has an effort underway to ban BPA from child drink bottles and toys and several states have enacted such bans but this does not go far enough.

Contact your representatives today and let them know that a national ban on BPA must be enacted. If they don’t listen then I suggest you make yourself heard at the ballot box this November.

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• Have you cut down on your exposure to Fluoride? Buy non-fluoridated toothpaste as a first step.
• Cut down on more chemicals by using baking soda under your arms rather than commercially-made underarm deodorants. Note that the baking soda may at first cause redness, but it will go away within days and is a great way to kill odors.
• Have a pounding heartrate that you can’t explain? You may be making too much RT3.
• Check out typical Questions and Answers about thyroid treatment and related issues.
• Want to write a GUEST BLOG POST on STTM? Go here.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3–4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago.  And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago.  She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

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• Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose.  If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
• If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
• Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
• Want to spread the word about far better treatment? T-shirts and bumper stickers are here.

And there are other countries I have felt were similar to my own as far as being modern, forward-thinking, and intelligent. The United Kingdom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treatment of all forms and degrees of hypothyroidism.

Because of the British Thyroid Association (BTA) and the Royal College of Physicians (RCP) ‘guidance’ on the Diagnosis and Management of Primary Hypothyroidism, most UK doctors refuse to prescribe any form of  T3, whether adding synthetic T3 to one’s T4, or using natural desiccated thyroid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism, and we do not recommend the prescribing of additional Triiodothyronine (T3) in any presently available formulation, including natural thyroid extract, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful”.

Anybody puking yet??

And, says thyroid patient advocate Sheila Turner of TPA-UK, “never has the RCP, BTA  produced any of the ‘overwhelming evidence’ they claim as supporting the use of T4-only, even though they have been asked to do so on numerous occasions. Overwhelming evidence supports the use of synthetic T4/T3 and natural thyroid extract.”

And don’t think it won’t happen where YOU live. Stupidity can abound.

What to do about it?? Answer a short questionnaire, created by Sheila and TPA-UK, which is for those with symptoms of hypothyroidism when treated with T4-only, who then tried a T3 thyroid hormone product with success. “The results of this questionnaire will enable us to create the first ‘World-wide Register of Counterexamples to Levothyroxine (T4) — only therapy’”, underscores Sheila. “The objective is to draw attention to the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.”

Don’t wait until stupidity and narrow-mindedness comes to where you live, as it also has in the country of Columbia, where Cynomel (T3) was retired more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thyroid Register.

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The STTM patient-to-patient website needs your help! I had to move the website to a far larger server in order to handle the immense amount of visits this site gets. And a larger server means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beetles and my husband won’t tell me what his Swiss Bank Account number is. So your donations can help keep Stop the Thyroid Madness up and running for yourself and other patients just like you! If you appreciate STTM, please go here to make a donation to the hosting fees. I do not get it! The hosting company does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

The Contact Me page on STTM hasn’t been working for weeks. And I didn’t know it.  But it’s fixed now.  Remember: it’s not to ask questions about your personal treatment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, bookmarked. I can’t promise how your doctor will respond, but it’s been positive for most when a book is referred to right in front of the doc. I hope it helps you, too.  P.S. Only books ordered directly from the publishing company get a bookmark of updated info. That’s also true if you have a book sent to a relative or friend.

Dr. Lowe is Editor-in-Chief of Thyroid Science, an “open-access journal for truth in thyroid science and and thyroid clinical practice”.  And in the recent issue, there is a remarkable and precise TSH (Thyroid Stimulating Hormone) hypothesis by none other than a brilliant UK  electrical and electronics engineer, Mr. Peter Warmingham.  In fact, his hypothesis about the TSH lab result when treating one’s hypothyroidism exactly corresponds to the successful experience of thyroid patients all over the world.

To quote Dr. Lowe in his introduction about Warmingham’s paper (FYI: “exogenous” refers to the thyroid hormone you give yourself;  “endogenous” refers to what happens naturally in your body):

Mr. Warmingham’s hypothesis is straightforward: When a hypothyroid patient (whose circulating pool of thyroid hormone is too low) begins taking exogenous thyroid hormone, a negative feedback system reduces the pituitary gland’s output of TSH. This decreases the thyroid gland’s output of endogenous thyroid hormone, and despite the patient’s exogenous thyroid hormone’s contribution to his or her total circulating thyroid pool, that pool does not increase—not until the TSH is suppressed and the thyroid gland is contributing no more thyroid hormone to the total circulating pool. At that point, adding more exogenous thyroid hormone will finally increase the circulating pool of thyroid hormone. The increase must occur for thyroid hormone therapy to be effective. The patient’s suppressed TSH, then, does not indicate that the patient is over-treated with thyroid hormone; instead, it indicates that the patient’s low total thyroid hormone pool will finally rise to potentially adequate levels.

In other words, when your doctor says no to an increase in your desiccated thyroid simply because your TSH lab result is, or would become, below the so-called normal range (and in the presence of continuing symptoms or a low temperature), he will usually end up keeping you hypothyroid! i.e. making an ink spot on a piece of paper more important than clinical presentation is just one reason why the current thyroid patient revolution represented by Stop the Thyroid Madness exists!

You can read Warmington’s entire paper here on Dr. Lowe’s site. For further information on the fallacy of the TSH lab test, go here or read Chapter 4, aka Thyroid Stimulating Hooey, in your copy of the STTM book for more detail.

P.S. Dr. Lowe is probably right on when he says he expects criticism to flow for the fact that Warmington is not an Endocrinologist and “how in the world can anybody but an Endo make a logical hypothesis about the TSH lab test”. Read more on Lowe’s thoughts about this here.   But enlightened thyroid patients around the world are collectively shouting “GOD BLESS AN ELECTRICAL ENGINEER!”

Jimmy Moore is a living success story about the benefits of a low carb diet–losing 180+ pounds in 2004 and regaining his health and vitality.  As I do about far better thyroid treatment,  Jimmy has been on a one-man mission to tell the whole world what livin’ la vida low-carb can do for them.

Eating low carb can be a very important strategy for those with hypothyroidism, especially while on desiccated thyroid and seeking to reverse the damage of being on T4 meds like Synthroid, et al.

And for those of you with adrenal fatigue, following Jimmy’s low carb life style can be very beneficial when you need to be on cortisol, which can cause weight gain for some, but is an important treatment for your low cortisol situation.

Have a great day!

So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.

As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue,  thanks to the garbage can TSH lab test or the stupidity of T4-only treatment like Synthroid.  Yet, here was a young woman, Mel, who was now the picture of health. What was her story??

Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain,  immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters–right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.

But I knew right away what she probably had: acute Epstein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years).  And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.

And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS.  For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.

And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat. It can result from one or more of the following biological stresses:

• being undiagnosed thanks to the inadequate TSH lab test
• being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
• falling into low cortisol from adrenal fatigue
• having chronic side issues pulling your body down such as gluten intolerance or celiac, low ferritin, poor digestion, or making mistakes in your treatment

Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.

What is EBV? Epstein Barr Virus,  also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager,  but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!

Why do so many thyroid patients find themselves with it? Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands.  Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment–all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.

What are symptoms of a reactivated EBV? It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well. When my EBV antibodies were acute, I would be in bed for 2–3 days after pulling weeds for just twenty minutes while seated.  I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.

How do I find out if I have it?? Ask your doctor to send you to a lab to be tested for it.   Or you can use Healthcheck USA–scroll down on the latter link to find the test. Put STTM10 in the form to get a discount.

How do I treat it?? It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum),  Vit E as mixed tocopherals,  selenium (200 — 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods.  And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal fatigue, gluten or digestive issues, low ferritin, and all other related conditions.

Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.

I had several labs done just to keep track of how I stood in several areas. One was RBC Magnesium.  “RBC” (red blood cell) measures the intracellular levels of magnesium–a more accurate picture than a “serum” measurement of your magnesium, which only measures 1% (and sadly, most doctors only measure your serum levels). i.e. even if your serum measurement was normal, your cellular levels may NOT be.

And my result?? My RBC magnesium measured at the bottom, very bottom, of the range. I was shocked. I eat healthy, and have been giving myself liquid minerals off and on for awhile. But clearly, I have been unable to raise my magnesium level. When I tried to raise my supplementation, I’d have to runnnn to the bathroom.

So I opened a book that a good friend gave me: Transdermal Magnesium Therapy by Mark Sircus, OMD. And folks, I am blown away. Here is what I have learned, and YOU may need to as well:

Magnesium Deficiency

• Affects at least 7 out of 10 reading this
• Can be there even if you feel well (me); will be there if you have mal-absorption (think gluten issues)
• Is common with diabetes, liver disease, and if you take or eat a lot of calcium
• Is especially problematic if you drink alcohol, sodas, caffeine and excess sugar, have a stressful life, sweat a lot, or take birth control pills
• Increases your risk of heart disease, strokes, muscles problems, cancer and many other illnesses
• Is common in a stressful life (and especially so if you have adrenal fatigue, or you are a Type A personality)
• Can be even worse than a lab test reveals
• Is found in someone like me who eats right!!

How a deficiency of magnesium affects you

• Can cause heart disease (and exacerbates my Mitral Valve Prolapse), plus strokes
• Promotes tooth decay, muscle cramping (me for over a decade)
• Lowers your immune system strength, energy levels, metabolism (I have to eat like a mouse, even on desiccated thyroid)
• Increases blood pressure (mine has risen at the same time I’ve noticed leg cramps…hmmmm)
• Decreases your body’s ability to use Vit. C and E
• Lowers the production, function and transport of insulin
• Causes an increase of toxins and acid in your body (think cigarettes, radiation, toxins in food/water/air)
• Makes you susceptible to host of diseases and conditions

Why you need higher levels of magnesium

• Helps the metabolism of carbs, fats and amino acids and influences 325 enzymes
• Counteracts and regulates the influence of calcium, which can harm you if too much
• Is required for the body to produce and store energy (just like desiccated thyroid)
• Calms the brain
• Removes toxins along with Vit. C
• Increases the efficiency of white blood cells (your immune system)
• Helps prevent cancer and slows down the course of cancer (along with zinc and selenium!)
• Can raise testosterone levels in men (and with zinc)
• Relieves pain! (important news for those with arthritis or other pain issues)
• Does the opposite of what is listed above about how deficiencies affect you
• Is nearly miraculous for the depth and scope of its application
• Saves billions of dollars as well as millions of lives

How will I treat my own low magnesium?? After confirming my situation via the RBC Magnesium lab test (very important to first find out. My doctor did it through Quest Labs),  I know I can’t improve it with oral supplements. The amount I would need simply causes diarrhea.

Instead, I am following the information I’ve read in this book and heard about from others: the use of  “magnesium oil”, which is magnesium chloride, and I’ll be rubbing it on my skin and following the information on how much. That is apparently the best way to give myself enough magnesium. I have personally ordered the Ancient Minerals brand–found it on the net. I may also use magnesium salts in water, soaking my feet in it. I plan on making sure my husband is tested, as I strongly suspect he is low as a diabetic with digestive issues.

Have questions about this? Get the book from the web or your favorite bookstore. Half.com has several copies. There is much more detail than I listed above which blew me away!

Yes, I feel really good with my natural desiccated thyroid in the treatment of my hypothyroid. But I want to be healthy in all areas, and this is one that looks important to me. (Thanks Stephanie)

Having read my blog posts about widespread negative patient experience with cellulose, she told the pharmacy that many of us have noticed distinct problems with the addition of cellulose in our desiccated thyroid medications–exactly why the newly formulated Armour caused too many patients to see a return of their hypothyroid symptoms. Naturethroid has not escaped the same fate for some.

When she asked if they could remove the cellulose, she received a firm and condescending “No” from the pharmacist, referring to cellulose as “a common ingredient in many medications and not a problem.”

Not a problem? Once again, patients are dismissed as if we couldn’t possibly know what works, and what doesn’t work, in our treatment and in our own bodies. A shameful reality. She left disappointed. 

What is cellulose? Cellulose is the most common organic substance found on our planet–a fiber abundantly found in plants and trees, and most especially in cotton.

Where is cellulose used? You wear it and you write on it! You eat it when you consume celery, potatoes, or mushrooms. It’s used to stabilize and thicken processed foods, and may be found in many cheeses, dry milk, puddings, and more. And since it’s difficult to find anyone allergic to wood, it’s been a common ingredient in medications, used as a filler.

So where’s the problem for thyroid patients?

1. Unlike the happy cows in their pastures chewing their cuds, human stomachs  have a limited ability to break cellulose down. Cellulose is a fiber. And what does fiber do? It “binds”. It binds to the desiccated thyroid that has gone down with it.  i.e. the life-changing effects of desiccated thyroid are clearly dampened by the presence of cellulose. Our “experience” has revealed it all across the globe since Armour was reformulated with an increase of cellulose in the mix.  i.e. we have witnessed a massive return of hypothyroid symptoms on the newly formulated Armour, and to some degree, on Naturethroid, whether the latter switched to microcrystalline cellulose or not (as compared to the larger celled methylcellulose).
2. Hypothyroid patients do not digest well. As one of many complications of hypothyroidism,  especially due to the inadequate treatment of T4-only medications and poor diagnosis from the TSH lab test,  low stomach acid and poor digestion is COMMON in hypothyroid patients.  So when you add cellulose to the mix, you are further damning thyroid patients.
3. Though not specific to just thyroid patients, we are not too comfortable with finding out that cellulose can collect in our lungs, as revealed in pubmed articles here and here.  (Thanks to thyroid patient Danny for alerting me to this.)

Bottom line, desiccated thyroid is a quality and superior treatment medication which has changed the lives ten-fold for thyroid patients around the world.

But cellulose and desiccated thyroid DO NOT MIX. And BRAVO to those compounding pharmacies who have listened and have used the beneficial probiotic acidophilus as a filler. We appreciate you.

P.S. I absolutely loved this comment made by another patient on Facebook when we were discussing the grief of taking our last pre-formulated Armour: Would love to get my hands on some old Armour again.…those were the days my friends…

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Want to know your options for better thyroid treatment?? Go here.

Need help finding a good doctor? Go here.

Think desiccated thyroid didn’t work for you?? Go here.

See common Questions and Answers here.

Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize,  self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

• Is self-treatment one  of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
• Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors.  The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more.  It’s not a pretty picture.
• Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less  than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
• Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms.  This is a risk for self-treatment.
• Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation.  It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice.  But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
• Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent  points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
• Has one negative journal article about someone who self-treated “resulted in desiccated thyroid  getting greater scrutiny by the FDA?” The answer can easily be:  no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
• Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it.  STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
2. a new debilitating condition like adrenal fatigue,
3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional,  negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere.

Why did they do this? It could be strongly related to the fact that in late 2007 through 2008, patients who used the 3 grain tablets reported they were suddenly and entirely ineffective. So, many of us surmise that Forest was attempting to “improve” (cough) their product.

Says one of those patients:  I had switched to the 3 grain tablet months before to save money and I used my pill cutter to cut it in half.  Then around November, my work pants were getting tight and I would come home tired, achy and weak. It didn’t take me long to figure out that Armour in the 3 grain was now like a sugar pill!

In the meantime, Forest brought out the newly formulated Armour, & patients who finished their old batch started the new batch. And since then, it appears a large body of patients have run as fast as they could to Naturethroid, or compounded, or T4/T3 or Erfa. The reason: a return of former hypo symptoms on the “new” Armour.

I have completed an informal survey with 24 individuals responding, and asked the following questions. After each question, I give a summary of the answers.

1. How long of doing well occurred on the newly reformulated Armour before you started to notice that you weren’t doing well?

Most answers are in the area of 2–3 months, with three saying a month, one 4 months, and three stating a few weeks. And comparing this to comments we’ve been seeing for the past year on patient groups, it’s common to feel good at first, but to crash within that 2–3 months.

2. What clued you in that you weren’t doing well on the new Armour?

The answers are all over the map: fatigue and exhaustion, hair loss, brain fog, weight gain, sleeping problems, constipation, achiness, depression, hormonal problems, moodiness, dry skin/elbows/thumbs and cracking skin, flaking fingernails, heart irregularity, forgetfulness. Five report skin breakouts similar to poison ivy.  Fatigue and hair loss were the most common answers.

3. Did you try raising it? What were the results?

The majority tried raising it, and results were: no results; barely made any difference: more energy but skin was a mess. The majority said nothing happened. Two doubled it with no significant results.  Two developed fast heart rate with no improvements elsewhere. One had to lower it because of a very low TSH. One stated she raised it to get her labs back up to where they were before…with little improvements.  And one said it made her too hot to continue raising it.

4. Did you try adding T3 to it? What were the results?

All said no. One said she tested here RT3 ratio and it was 11, which is bad.  One stated she asked her doctor for T3; he said no. I’d sure like to find someone who did add T3 who could tell us the results.

5. Did you do anything else to try and make the reformulated Armour work, and did it help?

All reported nothing helped enough.  Many stated their doctors tested for other problems, ranging from heavy metals, low iodine, B12–the latter helped one gal’s tingling. One stated her doc put her on Aprotocol for the digestive tract which helped the constipation but nothing else changed. One added compounded desiccated thyroid to her Armour—it didn’t help. One gal tried Thyro-care, which helped. But she and two others report getting a poison-ivy like skin rash on the new Armour.

Currently, we see newly diagnosed patients put on the new Armour, and veterans can’t help but wonder what will happen to them.

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On my April 17th blog post, read 10 reasons thyroid patients are still frustrated, angry and sick. That is followed by the April 19th blog post Should thyroid patients avoid self-treatment at all costs, with an interesting and strong Guest Post by Sheila Turner of TPA-UK and a good followup to the former 10 reasons post.

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